My Husband, My Life, My Love, My Family, My Cancer
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Mara - your cats are adorable.
Sondraf - Oh, my heart just breaks for you. I'm so sorry to hear about your night. Hugs to you guys as you navigate the next step for your husband. I agree with others here, I would let your team know in case there is any resource out there to help the both of you if you need it. I help my aging parents and the way it ends up is that we seem to trade off good and bad days. They help me when I'm struggling and I help them on my good days. So far it's worked out for us that way.
Mel - I wish I had a magic wand to help with your mouth sores. May they give you some relief soon.
Hugs to everyone here. I am hoping for better days ahead for all of us❤️
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Sondra, I'm sorry for the double whammy. Last year I was dx Stage IV, we sold our house of 35 years, my DH had to go to memory care, and I moved in with my DD because Xeloda made me non functional. My reaction was to be pretty numb. I agree that one spouse with problems is plenty. I hope your news is better than you hoped.
Mara, Lovely cats totally deserving of their smoothies.
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@mara51506 — cat pic was sooo cute. Thanks for sharing. They look like close friends
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Thanks everyone, it means a lot to be able to shoot a note into space and have support from others who 'get it' or are living it too. I really appreciate the support, this is all so weird.
I chased down next steps with the hospital and it turns out he needs to go on Monday for U/S, more bloods, and the specialist/surgeon discussion. Ill go along for that (fun times!) because this sounds like it needs a second, cancer-tuned set of ears. Will wait to inform families until we have more details, especially as this preliminary info is all coming off blood tests/observations and it still seems rather unbelievable.
He (finally!) got some solid sleep last night/today and I got more accurate information out of him. When he is really tired/exhausted/woken abruptly it comes across like hes having a seizure or other brain event (forgets english, forgets where he is, forgets what hes doing, confuses details). But he's always been like that, I know after almost 20 years to wait until he's gotten some sleep and he knows to never drive late at night. From what he said it sounds like the GP and the hospital folks got a glimpse of that yesterday.
The mouth situation is improving - he was able to eat some yoghurt, a bit of ice cream, and he powered through two scrambled eggs, two pancakes, and a glass of milk for dinner like a champ. He took me for my short walk and went on a longer one himself. The black tea bag/tannin is a great tip though - I have a bag chilling in the fridge as a test :) You'd think British paramedics would know that one. I dont even drink tea and somehow have a box of black tea bags in the back of a cupboard. (note to self: dont discard like the tampons)
On the plus side he has no pain or abdo discomfort, no gastritis or any reflux, and seems to think we are still going on vacation in three weeks. Maybe we will be, Ill try and keep that bit of hope alive.
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Not much going on today. DH is downstairs working on the Aquarium. He does monthly water changes, and vacuums the gravel. The fish are so used to the upheaval during his maintenance of the tank, but they are always very happy once it’s done.it takes him 2 hours usually to get it done, although today a little longer because he decided to take the rocks outside and lay them in the sun and spray them with bleach, then hose them down and putting them back in the tank. Now I will help him by holding the siphon wile he drains 1/4 of the water into buckets, and replace the siphoned water again in buckets.🙂 They love to claim new little territories and the males go around displaying their colors brightly to other males and the breeding females ( who have no color or very dull color) We’ve had fish since we were dating, and now the one big tank in the living room. Since I’ve been in treatment, I’ve spent a lot of time gazing at the tank. I love each individual fish. They have their own individual personalities. They are all very friendly. They all know my DH😊🐠. I’m just sketching in my sketch pad today. It’s so freakin hot out so I stay in the air conditioning. It’s not even the kind of weather you want to even take a walk in. When the sun goes down it’s still so damned hot, lik a steam bath or sauna. I feel weak enough as it is but this heat takes everything out of me. Even the pups don’t want to be outside. Sometimes I just feel like turning the air conditioner off, just to smell the night air owing in the window, the its just so hot and humid, so I close the window again, and wait for the air conditioner to kick back on again🙂. Stay cool and hopefully everyone is having a side effect free weekend, and if not we are all here for each other. I’m glad @candy-678, you stable so far and it’s pretty quiet on the cancer front😉. @emac877 that $10,000 copay sucks. There @ has to be other options for you to get the medication you need. @mara51506 sending virtual Hugs 💗to you and @cookie54 and all who are not only struggling with cancer mets but also doing it with their DH’ going thru health struggles and doctor appointments and scans themselves. In all your pockets💕
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Sondraf, sending you lots and lots of love. I was taking my husband to all his doctor's appointments/chemo for his lung cancer, when I was diagnosed. We cried together so many times, and it was hard at first to not feel like we were being punished in some kind of way. There were days/moments when I couldn't believe that we were managing at all, and I'm grateful that I was able to take care of him until his last breath - he was always much more symptomatic and ill than me, I was terrified that I would die first.
I kept telling my doctors, "but my husband has cancer" when they were telling me I did, too - like that was going to change my diagnosis somehow. Guess I'd figured it was an unwritten rule, kind of like you don't date your friend's ex, you don't get cancer when your partner has cancer. But apparently not. Hence the statement in my signature.
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Also, Mara those are two of the cutest cats I've ever seen!
Emac, it astonishes me that 10,000 would be considered a "co-pay". That's just a Pay. No co- about it. Seriously hoping the drug company will just give it to you for free, please.
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Hi everyone. Hope you get a cool, pain free evening of good sleep. It's so humid. I have two large bowels of water on the ground. The crows take turns drinking and swimming. Booty, the outdoor cat came in today without a storm scaring her. Walked right past the pit bulls she is so afraid of and settled in my bedroom. She's a Persian, abandoned by prior owner. Too darn hot for her black booty outside. In pockets of each and everyone that needs the extra care…
@sondraf Oh my heart is breaking for you two. The universe doesn't seem fair. I pray your DH will find he's healthier then the tests may lead you to believe. Sending all my love and prayers to the both of you.
As you know my DH was just diagnosed with non-hodgkins lymphoma. I need to tell my MO next visit. DH has his own MO. Logistics worry me, too. Like how the hell are we gonna take care of each other? I guess the answer is, one day at a time. I found a mobile medical group that will come to the house for blood work, etc. It's all so much and my DH hasn't started treatment yet.
@emac877 $10,000 copay is absolutely absurd. I got help from Pfizer for $3300 copay. I'm sure that you will receive your meds free. How the hell do they justify those prices?? I'm sorry for your progression. I know you had to be coasting along and to receive such a shock, it's just unfair. Much love and hugs sent to you.
@sf-cakes Oh what a heart break you have suffered. I hope that your moments together were the most precious times and I pray you have peace. Cancer is everywhere. It doesn't care about anyone's circumstances. Best we can do is muttle on, but it makes me angry that so many deal with this.
You know I try to emulate my Grammy who had many heart attacks and just kept on going in her own home. I don't know if she was in denial or stubborn. She lived to be 99 and was sharp as a tack her last day on earth. Her heart had just failed and she went to sleep peacefully. To be so lucky.
Hard to hold my head up courtesy of MS. I have 5 days of prednisone and hoping more healing will occur and quickly. Wanted to mention I have been trying to get Amitiza for IBS approved by Humana and it's still ongoing fight. But something really wonderful happened. Our pharmacist is so sweet and let us buy the drug for cost this month. There certainly are great people on this earth that care.
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Mel, hoping today finds your mouth sores feeling better.
Emac, hope you are feeling better today as well.
Wrenn they are all over me for another one which is fine.
Dodgersgirl, they look friendly in the picture but they also annoy each other too. Think it is mostly lack of space. My house is the size of a super tiny home so they can get in each other's way. Or they both insist on my lap.
Sondra, glad to hear your husband is improving. I have used tea for different pains, in and out of the mouth. I mix the ripped open tea bags with baking soda in the litter box and garbage as well. I hope you get to go on vacation.
Irishlove, I am sorry that MS is flaring up for you but glad you were able to buy the drug this month.
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Well, as usual, not much happening. Laundry in the dryer and made my weird breakfast, doing surveys and such for money.
The breakfast I made was a pancake sort of thing. I wanted a bit of everything, cheese, an egg and beans. Chopped it up in the chopper with some wheat bran, I like the texture. Dumped in a big bowl, took pancake mixture and chocolate milk, mixed it all together and it produced a couple of cake like things in the sandwich maker. You would have thought I could taste cheese, beans or chocolate milk but all I tasted was pancake. I put one of them in the fridge as I knew it would be filling. I also intend to make the other savoury with chicken seasoning. I don't like the super sweet stuff all the time. Again, it was just one of my experiments but gave me a nutritious pancake. It also is a good way to get my milk in as I don't love milk. It really was very tasty.
Got to figure more out with my steel cut oatmeal as well, might combine with meat to stretch the meal or add to a stuffing type meal, we will see.
I am feeling better, legs wobble a bit still BUT I am getting good at recovering from a misstep so am happy with that. Nurse coming to the house tomorrow for regular visit
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@mara51506 - happy to read you having success dealing with wobbly legs. Please keep updating us on your progress. I think it’s helpful for us to learn, too, what might help.
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Dodgersgirl, my biggest problem is dealing with the fear when I walk and feel wobbly but I make myself do it and if it won't work, will budget for UBER and grocery delivery.
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I’m so far behind, things are moving fast on this thread. Sad to see the troubles some are having and I wish you all an easier time and better news. My BFF has been here for several days and it was a great visit, haven’t seen here since 2019. We partied, went to my favorite swimming hole, explored our mountain top and she got to pet a wild donkey.
I have a follow up with my MO on Tuesday about the “enhancement” in my brain but I expect we’ll stay on Enhertu and keep watching it. I’ll try to get a few things done on the property but will mostly take it easy this week.
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Mel,
Re mouth sores….here's what I've learned to try to keep my mouth healthy while on cancer meds. 1.) Xlear Sinus Rinse packets - xylitol and saline; use as a mouth rinse 2x daily, not as nasal rinse; learned about from another BCO commenter; I get from Amazon. 2.) AO ProVantage - antioxidant infused dental gel; recommended by my periodontist; I get from Amazon; only use when I actually have active mouth sores 3.) StellaLife Vega oral gel - homeopathic; recently recommended by my periodontist, but I have not used yet; available on Amazon. 4.) Bristle Oral Health Probiotic - just started using 1xday; available from the Bristle company; expensive, but free shipping; I completed their oral bacteria test first; expensive, but pretty interesting to see my results; the company gives oral hygiene suggestions based on your results. More about xylitol: it's a 5 carbon sugar and thus effective against some oral bacteria because they can't use it as energy. I believe xylitol comes from birch trees and it's use was developed by the military to reduce soldiers' caries rates. It bothers my stomach, so when I use a product with xylitol I always just swish around and spit, never swallow.
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Good Morning everyone, and wishing you all a good day today. I’m going for my 6 month mammogram on right breast diagnosed with LCIS. I hate going because I’m never just in and out and it hurts when the make my breast a flattened pancake in that machine to get pictures at every angle😬
@micmel I hope your mouth sores are subsiding and you are feeling better.
@illimae Good to see you and your pictures😊🩵
@mara51506 I hear you about walking with fear about your wobbly feet. I’ve taken a fall in front of a grocery store with a wobbly ankle. It hurts to fall and is embarrassing too. Take care of yourself.
@weninwi Yes, I don’t get as many mouth sores with oral probiotics. I get them from treatment side effects and if I’m fighting certain seasonal viruses. Good old fashioned swish of Baking Soda always does the trick for me taking the pain away.
@sondraf, so scary when DH is diagnosed with anything. My DH has always been strong and healthy. He’s been going thru lots of testing for swollen lymph nodes but everything is ok so far. Hope your DH has a good day today. Good days keep us from worrying.
@irishlove You are amazing taking in that little Persian homeless 🐈⬛ kitty. Heat, humidity, and storms must be taking its toll on her. God Bless you Irish😊
So gotta run. Places to go Drs to see . BYEE💗
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wenin~thank you for that information , I will try anything at this point . It’s driving me crazy that I will say. I took notes so thanks again. I hope you’re well.
hope everyone else is doing good. I’ve been busy fussing. With this mouth. But I check in all day long. Mae~ good to see you glad you had fun with your friend. Good medicine there!!!! In your pocket for your appointment.0 -
@sondraf — sending positive vibes to you guys this morning. Keeping you both in prayers
Virtual hugs
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Mae, glad you had some fun with your BFF, lovely about the donkey as well. In pocket re the enhancement.
Mel, sending healing thoughts your way, that advice sounds about right. I used to get horrid mouth sores in the beginning and these were all recommended to me, I also used old tea bags as well as swished with baking soda.
Not too much to get done before nurse arrives. While I wait, got the TV and laptop on, they play videos and when an ad plays, I make some money. I have two of my laptops on the go, I rarely throw out electronics. Laundry is almost done as well.
Food was very basic but good, english muffin, spread some butter on before putting in toaster oven. While that was going, fried up couple of eggs in my baby fry pan. Cut everything up. No seasoning other than salt, hit the spot. Must remember that basic always tastes good. Cats enjoy precleaning the dishes that include egg yolk. After the nurse goes, just waiting for a laptop cooler since I use two now.
Hope everyone has a decent day.
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@illimae - nice to see a post from you. Always hope we are all doing as well as possible
@shanagirl— good luck today with mammogram@micmel — hope the mouth sores lessen. Makes even talking difficult.
@weninwi - thanks for sharing mouth sore tips. I learned a lot from that post.
My good news today is that after 3 days of no sleep ( due to chemo and steroids), I slept 6 hours last night! It was wonderful
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mara, the fear of falling is real! I get it and I know many others do, too. DH even wants me to take me phone with me when I go out to our detached garage - just in case.
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@sunshine99 — I ask my hubby to take his, even to the garage so I can call him if I fall in the house.
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@candy-678 — are you watching the reality show filmed last year in Franklin Co with 2 NYC reality celebs? I think it’s on Bravo. Not a channel I normally watch but was interested to see So Illinois
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Dodgers— I do not have Bravo channel. Not in my cable plan, and would be extra cost each month. Franklin County is the County to the South of me. That would have been interesting. Maybe I can Google about it.
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Morning to all, thinking of many of you this morning.
Mae- Love the pics, looks like you had a great visit!
Mara- Your cats are adorable! Hope it was a good visit with the nurse. Love that you are so resourceful in all that you do daily.
Shana- Fingers crossed for a negative mammo. Glad your DH is doing ok.
Mel - Hoping each day your mouth is feeling a little better.
Emac How are you making out with insurance? Hope it's resolved and you are starting treatment soon.
Sondraf - Thinking of you and your DH. Hugs.
Sunshine How's the swallowing this week?
Quiet week here which is good! Have a wedding on Saturday ,looking forward to it. Also my daughter and her boyfriend are moving back to NJ this weekend! Will be so nice to have them back this way plus renting a house at the shore for the year. Looking forward to some relaxing beach days together.
Hi to Candy, Irish, dodgersgirl, weniwi and everyone else in the room. Hoping it's a good day for all🤞
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Dodgers- I just Googled it. Saw the trailer for the show. Sounds funny. That town is 20 miles from me. I never heard a word about this show, so they did not seem to advertise it much.
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@candy-678 — I think it was filmed last year but I could be wrong. The show started about 3 weeks ago. They noodled catfish in Rend Lake in episode 1. The celebrities are staying in The Benton Hotel.
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Doing ok with the swallowing. I'm down 2 pounds since last week. I'm trying to up the calories. I had some instant grits yesterday (Southerners, don't judge - LOL) and added butter and cheese. It was OK. My favorite is Birds Eye creamed spinach with added cream cheese. The spinach souffle I tried was too hard to swallow.
NOTE: If you've seen the movie, "My Cousin Vinny," you'll get the grits comment.
Sleep was elusive last night. Was awake until about 4 am. No coughing fits, though, so that's a good thing.
Happy Tuesday.
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@sunshine99 — hope the swallowing continues to improve. Laughed at the My Cousin Vinny’s grits comment. Funny movie. You need magic grits, eh!
Reference swallowing, how liquid-like does “food” need to be?
Keeping you in my prayers. Hope you find a way to keep weight on but without swallowing issues. And hope sleep finds you tonight.
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Sunshine, nothing wrong with what you ate. When I was having diet issues when I first started out, I began putting premade foods with some water so I could drink it down. Helped a lot. I also like magic bullet ice cream smoothies, can go with scoops of ice cream of any flavour and milk or almond milk if lactose intolerant. Can put fruit in as well. Lots of calories that way that are needed. If you have dietary considerations, pretty much anything can be put in the blender.
I discovered something new regarding the stuffing mix, I have not liked whole boxes so making up little bits but today, I was starting to get some ready and decided to eat it raw, seasoning and texture were good, they could function as croutons for salad or crunch for other meals. I made some soup noodles, added the stuffing croutons, just a handful, 1 tbsp mayo, squirt of ranch and 1tsp of dry chicken broth to season. I don't eat soup, change into pasta meal. Mixed it all together, was very good. Not too nutritious but that was what I was craving at the time. I will have beans and chicken with some cheese later, chopped up of course. Been mulling over doing something mixing my beans done up like ground beef and popcorn, we will see.
My latest project is reorganizing everything and disposing of other things not being used.
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@mara51506 — your food writings today made me hungry. I used to snack on crotons. Yummy. Some days now they are too hard for me to chew. Sad.
@sunshine99 — Mara’s comments on blender food sound good. I have a VitaMix that hubby uses to make great smoothies and soft fruit “ice cream”. And we have a Blendjet hubby uses each morning to make me a high protein breakfast drink.
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